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Mackenzie’s Mission recognized by Mayo Clinic in the Hall of Benefactors

We thank the Mayo Clinic for the recognition of our ongoing support of their Amyloidosis Research Fund. Starting in 2017, shortly after Mackenzie’s Mission was founded, our cumulative support has been meaningful, and we are now Distinguished Benefactors.

In addition, we are proud to be in the Mayo Clinic Hall of Benefactors!

Dr. Morie Gertz at the Mayo Clinic works with a multidisciplinary team of experts and helps to lead research initiatives which are widely recognized worldwide as one of the original amyloidosis centers of excellence.

While we know that funding research, bio banks, conducting clinical trials, and more requires significant funds, it is our hope that our year-to-year support helps them do more and make an even bigger difference.

We are eternally grateful to the amyloidosis team at the Mayo Clinic and all they do for our patient community to improve lives.

Mackenzie’s Mission at the Bradley Z Naifeh Amyloidosis Conference 2024!

We were proud to be part of the 2nd annual Bradley Z. Naifeh Amyloidosis Conference 2024 at Houston Methodist! On day 1 the auditorium was filled with healthcare professionals who learned about the many facets of the clinical side of amyloidosis from experts such as Dr. Ron Witteles of Stanford and Dr. Angela Dispenzieri of Mayo Clinic.

On day 2 the auditorium was packed with patients and caregivers of all types of amyloidosis, offering a wonderful opportunity to learn about the disease, resources available, and network with other patients and caregivers.

Mackenzie and Deb had the chance for a photo op with Megan Fleischfresser Naifeh (daughter of Bradley Z. Naifeh who lost his battle with AL Amyloidosis) and Dr. Arvind Bhimaraj (co-host of the conference).

We thank the Naifeh family for their support of this valuable annual conference.

ASB Participates in Rare Disease Day 2024!

The Amyloidosis Speakers Bureau was thrilled to participate on Rare Disease Day! One way we were part of the celebration was for our patient educator Sean to share his journey at Keck Graduate Institute’s Rare Disease Awareness Fair.

 

The Story Behind the Amyloidosis Speakers Bureau

The story behind the Amyloidosis Speakers Bureau (ASB) is very special. In this video we hear where the original concept of patients presenting to medical students came from — Dr. Gordon Huggins of Tufts University School of Medicine. Hear how he was “auditioning” his patients to speak to his class of second year cardiovascular medical students, and then he met Charolotte Raymond. It was an experience so meaningful it inspired Charolotte to conceptualize a program whereby patients would educate medical students across the country. She partnered with Mackenzie’s Mission in 2018, where together we took her original concept and collectively developed it into the Amyloidosis Speakers Bureau. The ASB was officially founded February 1, 2019.

Humanizing Medical Education: Beyond Bullet Points

The content of medical education is appropriately clinically centered. The delivery of this content remains relatively unchanged over the decades – typically taught by medical professionals through lectures, PowerPoint presentations, and patient case studies. We posit that there is an essential missing component: the patient voice. During the didactic years, medical students rarely hear from patients about their symptoms, diagnostic journey, emotional management, support and resources, and relationship with the medical community. By humanizing medical didactic education, patient insights can offer an impactful and durable education that complements traditional didactics, developing what we believe will be better and more empathetic future medical practitioners.

2023: Mackenzie’s Mission – Our Report Card

2023: The Year of Many Accomplishments

This was our sixth full year of operation. We were busy with lots of activities to advance our mission to make a difference in the fight against Amyloidosis and lay a strong foundation for the future. Operationally, we continued to run extremely efficient and lean, and laser-focused on making a difference in multiple ways.

  • Raising awareness about Amyloidosis, which we believe can lead to earlier diagnosis and better outcomes for patients.
  • Supporting medical research on Amyloidosis, seeking to understand more, develop better and less invasive diagnostic approaches, and develop more effective treatments, all of which will improve and extend lives.

 

RAISING AWARENESS

The first part of our mission is raising awareness. 

Amyloidosis Speakers Bureau (ASB): Back in February 2019 we launched the Amyloidosis Speakers Bureau as the cornerstone of our raising awareness effort. It is a direct outreach with live presentations by patient educators, done both virtually and in-person.

Amyloidosis is considered a rare disease and is not well known. However, there is a belief within the medical community that this disease is not rare, it is underdiagnosed or diagnosed when it is too late to make a difference. The complexity of this disease makes diagnosis one of the biggest challenges affecting patient lives. It is not uncommon to hear from patients that it took multiple years and multiple doctors to ultimately arrive at a correct diagnosis, all the while the disease continues to progress. Until a cure is found, it is imperative to raise awareness within the medical community to close this educational gap so that a diagnosis can be determined much sooner, enabling effective treatments and therapies to slow the disease progression and improve patient survival.

 

Our response to this crisis is the Amyloidosis Speakers Bureau (ASB), an initiative focused on educating the medical community about this disease through presentations from amyloidosis patients, an educational video from medical experts, and our monthly educational updates. Our target audience is the next generation of doctors during their first/second year of medical school, as well as internal medicine residency programs for physicians launching their medical career. 

 

During 2023, we gave 81 presentations to over 3,800 medical students and residents. Since we began in the fall of 2019, we have given 289 presentations to over 14,000 medical students and residents!

 

ASB Published Research: In June we published our research paper “Evaluating the Amyloidosis Speakers Bureau: the influence of amyloidosis patients’ narratives on medical students’ knowledge, attitudes, and behavioral intent”, co-authored with one of our speakers Dr. Kathy Rowan, a passionate social scientist Dr. Adebanke Adebayo, and amyloidosis expert Dr. Vaishali Sanchorawala. The purpose was to analyze the impact of an ASB presentation on medical students and assess whether we were making a difference. Needless to say, evidence confirms the ASB DOES make a difference! You can read it here in PubMed.

 

New Educational Video Series: In September we launched a new Expert Insights Into Amyloidosis series of short educational videos from our ASB Advisors. Developed for our medical student/resident audience, we have found that our patient community is also finding value in these videos. These 10-15 minute videos have thus far proven to be a massive hit. In just over three months, the initial 16 videos have amassed over 45,000 views. Shockingly awesome! Good news is we continue to have more videos in the works. To view, visit the Education hub of our new website and click on the “Expert Insights” category.

 

Videos to Humanize Amyloidosis: The complexity of this disease makes it elusive and difficult to diagnose. It isn’t well known. We recognize the importance of increasing the clinical awareness within the medical community, yet we also believe in the importance of humanizing this disease – bringing the patient to life. In 2023 we created our 3rd FACES of Amyloidosis video, complementing versions previously done in 2018 and 2020. Wildly popular and powerful, they showcase the diversity of our amyloidosis patient community. In addition, bringing the patient voice to clinical medicine is also important, and a recent video explores this imperative (Humanizing Medical Education).

 

Call to Action Video Directed at Medical Educators: In November we relaunched our important call-to-action video “Closing the Medical Education Gap: The urgency to act is NOW”, developed for the medical educator audience. Watch here (7:50 mins). Over a thousand views so far.

 

New Website: In November we launched our new website, providing more information about what we’re doing, links to resources for the patient community, as well as a new digital platform for education to both the medical trainees and patient community.

 

Continuing Medical Student Education: After every presentation we invite medical students interested in continuing to learn about amyloidosis to join our ASB Briefs mailing list. Today, that list numbers over 825! Each month we send a brief discussion about some aspect of the disease with a growing library of links to informative presentations / videos by medical experts, and announcements regarding advancements in treatment. The intention is to keep amyloidosis more front-of-mind and educate on the many facets of this complex and multi-systemic disease.

 

Digital Voice: We appreciate that thanks to social media platforms, our voice of education and support can far extend beyond our direct outreach. We invite you to follow us on Facebook (Mackenzies Mission), LinkedIn (Mackenzies Mission), and Twitter “X” (@Amyloidosis_ASB) for frequent posts about what’s going on.

 

SUPPORTING MEDICAL RESEARCH

The second part of our mission is to help advance research. Research is at the core of developing new therapies to improve patient lives. Patients benefit from research through early access to novel therapies, new tests for earlier/easier diagnosis, and new approved treatments. However, research is expensive, takes many years, and is absolutely critical to the deepening of knowledge fueling these advancements. And while significant progress continues to be made, much more needs to be done.

No progress in the fight against this disease happens without funding, and the NIH provides a mere fraction of what is needed. Researchers require money to run their labs, maintain bio banks, purchase equipment, run clinical trials, and more. To operate, they rely on private foundations (like Mackenzie’s Mission), grants, and individual donors.

Each year, a portion of our budget goes towards advancing research. We are grateful for the support received from donors like you and fundraisers, and proud that collectively these funds are changing the therapeutic landscape and benefiting patients.

In 2023, our donations pushed us over the $1,000,000 threshold for total money donated!

 

WHAT ARE OUR GOALS FOR 2024?

In short, keep doing what we are doing, but do more of it.

 

Raising Awareness

  • Remain focused on the Amyloidosis Speakers Bureau (ASB). With 289 presentations to more than 14,000 medical students and residents, this is where we believe we can make the biggest impact from our efforts. Engagement from the amyloidosis patient community to serve as patient educators, securing meaningful grants, and proceeds from donations/fundraisers will be key to complement the operational and legal infrastructure required.
  • Opportunistically speak at conferences or sessions that are aligned with our mission. For example, we will be speaking at the Bradley Z. Naifeh Amyloidosis Conference in March, the Cardiovascular Institute of Philadelphia in April/May, and the International Symposium on Amyloidosis (ISA) in May.
  • Develop a digital outreach program to expand beyond our direct outreach on our social media platforms, with the goal of increasing the following of our educational content among the patient community and in particular, the medical community.
  • Add new and diverse content about this disease to our website education hub and patient resources.
  • Maintain our monthly medical student and MD/Resident mailings, as well as our broad Mackenzie’s Mission newsletter.
  • Explore additional opportunities, both large and small, which enable us to further spread the word on the importance of early diagnosis.

 

Supporting Medical Research

  • Continue our support to advance medical research by donating a meaningful portion of our budget (excluding ASB grants and directed donations) to leading research institutions whom we know are working to advance their knowledge, support patients, run clinical trials to provide early access to developing drugs, and find new therapies to fight this disease.

 

WITH MUCH APPRECIATION AND GRATITUDE

This last year you may have donated cash or securities, sponsored a Facebook fundraiser, played in our Play FORE the Cure charity golf tournament, participated in our 3rd FACES of Amyloidosis video, or given us a grant to support our Amyloidosis Speakers Bureau medical education initiative. You may have been an Amyloidosis Speakers Bureau patient educator, liked/shared our Facebook posts, or taken the time to read our posts or newsletter to learn about amyloidosis. Whether you did one of these or many, you helped us push forward our fight against this disease and we appreciate your support.

 

We also want to extend a special thank you to our volunteers who passionately and graciously devote their time and expertise. Whether to help at our charity golf tournament, or one of many facets of the Amyloidosis Speakers Bureau (e.g., speaker development, running Zoom presentations, researching contacts, writing ASB Briefs, writing our ASB research paper to prepare for publication, or producing our videos), we can’t even begin to accomplish all that we have without YOU. Thank you!

 

I am encouraged by the impact Mackenzie’s Mission is already making after just a few short years. Connecting with the amyloidosis community and working together to make an impact is extremely rewarding. There is much work to be done, but with so much help from the community and our supporters I know we can win this fight!

 

With warm regards for a wonderful and hopeful 2024,

 

Mackenzie

 

AN UPDATE ON ME

This past year was a busy one! Mackenzie’s Mission and the Amyloidosis Speakers Bureau accomplished many important projects, laying the foundation for an exciting future. Outside of the foundation, I completed my didactic year in the Physician Assistant Program at Northeastern University and am now well into my second and last year, consisting of clinical rotations. I graduate in August 2024 and will look to start my career; in what specialty, I’m not sure yet! Between graduation and starting my career I will be traveling across India and Nepal. As for my disease, I am monitored closely, and it continues to be under control. I feel great!

Breaking News – FDA approves WAINUA for ATTRv-PN

The U.S. FDA has approved a new treatment for adults living with polyneuropathy of hereditary transthyretin-mediated amyloidosis (ATTRv-PN).

WAINUA™ (eplontersen) granted regulatory approval in the U.S. for the treatment of adults with polyneuropathy of hereditary transthyretin-mediated amyloidosis.
  • U.S. FDA approval based on Phase 3 NEURO-TTRansform results showing WAINUA demonstrated consistent and sustained benefit halting neuropathy disease progression and improving neuropathy impairment and quality of life
  • Additional regulatory reviews for WAINUA underway in rest of world
  • WAINUA will be available in the U.S. in January 2024

READ PRESS RELEASE HERE

“Many people living with hereditary transthyretin-mediated amyloid polyneuropathy are unable to fully enjoy their lives because of the relentless, progressive and debilitating effects of the disease,” said Michael J. Polydefkis, M.D., professor of neurology at Johns Hopkins University School of Medicine and an investigator in the NEURO-TTRansform study. “Approval of WAINUA represents a meaningful advancement in treatment, one that gives those who are living with transthyretin-mediated amyloid polyneuropathy help managing the disease.”

Research presented at NCA Conference!

Co-author Dr. Adebanke Adebayo presented our published research about the ASB at the 109th annual conference of the National Communication Association. She was a panelist for the “Health Communication Data Blitz: Patient-Provider Communication and Care” session.

 

 

 

 

 

 

 

Standing room only!

 

Reuniting three of the co-authors (left to right): Dr. Kathy Rowan, Dr. Adebanke Adebayo, and Deb Boedicker.

 

Click on the title below to read more about our research and find a link to the PubMed peer-reviewed paper.

https://mm713.org/blog/published-research-evaluating-the-amyloidosis-speakers-bureau/

ASB Presents to 1st Physician Assistant School!

While our primary focus at the Amyloidosis Speakers Bureau (ASB) is on medical school students and internal medicine residents, we are very open to presenting to other groups that are aligned with our objective of closing the education gap within the medical community.

In early 2023, a Tufts University School of Medicine student in the PA program learned of our upcoming May presentation to the medical students. Conversations ensued with the medical school course director, PA program director, and Mackenzie’s Mission regarding the possibility of the PA school class joining the medical school class for the ASB presentation. Success!

So in May 2023, the ASB presented to 200 Tufts University School of Medicine medical students and 50 physician assistant students!

The experience and feedback from the PA students to their program director was so positive that all have agreed to make this an annual event within their curriculum!

 

Lane Abernathy joins Amyloidosis Speakers Bureau Operating Committee

In March of 2021 we lost a dear friend, co-founder, and operating committee member of the Amyloidosis Speakers Bureau (ASB) to amyloidosis … Charolotte Raymond.

We believe it important to continue to be a patient-led organization, so we have proudly added Lane Abernathy to our Operating Committee. Lane began as a patient speaker with the ASB in 2019, and expanded her involvement in early 2020 to help us deepen our support for our speakers and develop their presentations. She has been a wonderful supporter of our efforts and we appreciate all she does for the ASB. As an operating committee member she will help guide our educational initiative long into the future.

Welcome Lane!

 

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